Ileostomy

I would like to share tips, secrets, anything that helps intimacy be more alluring to others.  Dont be shy, I need answers.

Looking for feedback from those who have ileostomies and especially anyone who had a colostomy that was changed to an ileostomy. A little over 6 years ago I got a permanent colostomy. But now my gastro doctor said because of a bad stricture and polops in my bowel he is recommending to my colon surgeon that it be made into an ileostomy with most of my bowel removed--right now I have about 40% of my bowel left. Questions: Anything in particular, any suggestions or ideas you have that will help me adjust to an ileostomy? In particular I a...

Due to recent events in my life, have been feeling the need to go out and get absolutely sh*t-faced! As previously  I  have only had a glass or two of wine with dinner (and had no problems) was wondering if I have a  few more (and  I'm talking  the hard liquor lads here...Jack, Jim and Jose!), that my ileo will freak out and not be able to handle it?! I am not planning on making a habit of it, but am in serious need of becoming "comfortably numb" just for awhile.  I n...

?i have had an ileostomy for 51 years. does anyone have any information on long a person has lived with an ostomy? Also, any information about conditions that are caused by having ileostomy for so many years would be appreciated.

Hoping someone out there can give me some words of wisdom.  I had ileostomy done 2 1/2 years ago.  Due to chrones and my colon exploding in seventeen different biopsied pieces, I had a Very Good outlook of my surprised surgery after a colonoscopy, mainly cuz I was no longer in awful pain 24/7 anylonger.  However, my great mood has slowly turned into a very depressed (even tho I fight it) and angry mood.  I have continuiosly had leaking problems.  I have talked to my dr. and he sends me to t...

hello I have just joined this site.  Not sure how it quite works yet. I have a ileostomy and I am single.  When I seem to meet guys and you tell them you have a Ileostomy they quickly disappear. Just wondering if anybody else has this problem?

Hi - I guess this is the correct forum to ask post this.  My husband has bilateral nephrostomies, a urostomy, and now an ileostomy. He hates Ensure, Boost, Special K breakfast drink, and Carnation Instant Breakfast. I've mixed them with ice cream and fruit and he just can't take stand the taste of them anymore. I've been trying to get him to drink two or three milkshakes each day - today was whole milk, vanilla ice cream, powdered milk, three mini 3 Musketeers bars, and 3 tbsp peanut butter. He liked it, but it's only a matter of...

Well friends once again I'm in need of information. A little background, two months ago I had to buy new jeans so I got them a couple of inches larger than normal, next I put on my braces to keep my pants from falling to my knees. As i sit here now, no braces, no belt, top button open. This started about two weeks ago after getting some sharp pains above and below the stoma and a circle about six or seven inches in diameter and has swollen outward about an inch and a half, hard to tell. can anyone tell me if that's the way a hernia starts ...

I have to have one last surgery to take out the rectum (can't leave it due to cancer risk) as I've decided not to re-attach.  Haven't had any issues since my ileostomy 4 years ago and don't really want to go through the recovery and possible complications of re-attachment. The main problem is that I am healthy and have to go in for surgery which will make me feel crappy.  It's easy to go in if you're sick because the point is to make you better.  This will make me better in the grander picture but I'm worried ...

Hi ...i had a emergency ileostomy done in feb 2012. I was on life support and in a coma in icu for over 4 weeks. It was a shock to wake up with this bag hanging off me....they said they could do a reversal....in a few months... Well a few months turned into 15 months....because i had a infection and plus the surgery was scheduled 4 times and cancelled....twice by the doctor..to put a emergency in my spot and twice i made it to the operating room only to have it cancelled because of my lungs... I was very nervous...because i had read all...

Hiya everyone. I am soon to have surgery for ulcerative colitis. I'm just very confused which surgical option to choose.  - I can either choose to have a total colectomy with removal of rectum and anus and have a permanent bag. - I can have a j-pouch formed and have a temporary ileostomy while it heals and then have it reconnected later on.  - or if undecided they said they can leave the rectal stump, remove the colon and then decide a year down the line whether I want to keep the ileostomy permanently or have it reversed. I ...

I am trying to find out how long everyone had to wear diapers after their surgeries. my boyfriend had an ileostomy and is still having issues with anal leakage. he is still in diapers 8 weeks post surgery. please help

Hello does anyone know what food to stay away from or what is good. I only had this done so I am all new to this.

Hello, I'm new to this site and i have been living with an ileostomy since 1978 due to severe ulcerative colitis.The question i have is after your (ileostomy only) surgery did your start to develop periodic bouts with depression and or anxiety panic episodes?  Did your bouts require medication and for how long?    You see after surgery i started experiencing anxiety and panic episodes on and off throughout the years and they continue today. After researching a little about serotonin the feel good chemical ( which 85%-9...

I had an attempted colostomy reversal, they found yet another leak and now I have an ileostomy.  I am having trouble getting my bag on before any output and it's made the skin below my stoma very red and raw.  Anyone have tips or suggestions? Thanks in advance!

Just over a month since my perm ileostomy. Have had moderate to heavy anal discharge and thought it was the rectum healing/weeping (surgeon left a rectal stump) or an infection. Saw surgeon last week ... he's saying it's the UC in what's left of the rectum . I see my GI specialist tomorrow. Darn - I still have to use a heavy menstrual pad and am back on the Salofalk suppositories. And I'll still have the unpredicatbility of flares. Pre-op, my flares were months long. I was SO stoked that my UC would be a thing of the past. Of c...

Can I ask what others experience has been with weight gain (or lack thereof) following an Ileostomy? I had my Ileostomy coming up to a year ago (it will be a year in May). This was after suffering from an acute attack of Severe Ulcerative Colitis. Before the illness I was about 75 kgs. I'm 5 ft 9, so I wasn't a muscle man to start with, but was a fairly respectable weight. After the operation and a combination of the illness, loss of appetite and NHS food I was down to 55kgs. Not at all a healthy weight! I had the summer of work to...

I was wondering if anyone has any experience with wearinig their pouch sideways.  I use a two-piece pouch system.  My stoma is located in a kind of different area - pretty much in the front/center of my abdomen, just to the right and above my belly button.  Therefore, the pouch hangs pretty much down the center of my body from just under my bust to my crotch.  Normally, I wear long blouses to cover past the bottom of the pouch.   I was thinking, though, that if I wore a blouse that wasn't ...

Hello everyone......i just want to complain for a bit.......ive had a colostomy done in january 2010 and almost lost my life.  I had that reversed in september 2013 because the surgeon felt it would give me back life....im really not sure why he said that because i absolutely loved my COLOSTOMY!!! Now fastforward to present day i had an emergency surgey done february 2015 and had all of my colon removed and the surgeon gave  me an ILEOSTOMY....well let me tell you I HATE THIS THING!!!! I cant eat anything without it passin...

I have had my ileostomy for three years now and still have not gotten used to it. If I eat after 2pm in the afternoon I am up all night having to empty my bag or in fear that I will have a break because a thicker consistency will break through the barrier. This ensures that I only eat once a day really and I am constantly hungry. Also, I have yet to figure out which product will work to make sure I don't have breaks due to thicker output and how to ensure my skin around the stoma is not sore and burining from a very liquid output. My stoma...

I've had my ileostomy for a year and a half now and feel I haven't to accepted or came to terms with it. How would people advise I try to accept it

Hi all, About 8 months ago, I (ilostomy '09, proctectomy '11) started hgaving some intermittent, occasional pain to the right of my ostomy (about 1 to 1.5 inches from the stoma). Saw GP who seemed to ask the right questions and said it was probably muscle related (ostomy working fine). I had had a particularly active few months ... so with my poor abdominal strength/muscles, his diagnosis seemed to fit. Slowly got worse. Pain is worse (knife like) and now hurts with any movement. Sitting or laying down ... no pain. When I press on th...

I had an ileostomy in April 1983, then in October 1987 I had a (BCIR) Barnett Continent Ileostomy! Does anybody out there have one? I was in Mississippi and met 2 people; however, I cannot find them? Freka and John Busan?

I wanted to put a quick update here to let those interested know how I'm doing since my ileostomy reversal 3 months ago. I had good progress for the first 2 months but the past 3 weeks seem to have gone backwards.  I'm still in a lot of pain and spending too much time in the bathroom (8 - 12 x daily).  I am housebound all morning and if I need to go out at all, I fast beforehand.  Gas and cramping are a huge problem! The surgeon is fairly happy with the way things are going.  He told me 2 weeks ago ...

hi. i have had my ileostomy for 2 years now. I was single before my operation and have 2 lovely girls. I would like to meet some special, male. I have tried dating and obviously have had to tell potential new boyfriends. I found that very hard as I cant really come to terms with it. They have been reassuring that it makes no difference. Why do I feel after telling them I am not good enough, begin to feel paranoid that they dont really like and iv put them off. I cant shake the feeling and end up calling it a day. Anyone got any dati...

My doctor, a colorectal surgeon, has recommended a temporary ileostomy for puborectalis contraction and constipation that have resisted other treatment for years. I'm trying to seek out ALL the information I can beforehand. I want to be prepared particularly for the smaller details I should expect. I want as much of the stress and shock as possible over with while I'm not sick either from a colon prep or surgical recovery. I'm sure I'll think of more, but right now I've got three top concerns. First is the burning caused by digestive enz...

Had my ileostomy five months now, just begining to get my head around it. I live near Lincoln and would love to chat and share experiences...........

Once again I am turning to you all for advice.  My surgeon had told me that once in a while I might find that I pass mucus from my rectum even a small amount of stool.  He did remove about 1/3 of my rectum but said I still have enough of a functioning rectum that this could occur.  Well, in 3 weeks since my surgery I have now passed stool 5 times.  This seems crazy to me.  It's always a small amount but still I really don't get how it's happening at all.  Has anyone had this exper...

I am new to OstoMate and just a bit shy about asking questions. But from what I have read, I know I shouldn't be concerned about asking any question, so here it is: Soon after my ileostomy surgery in 2013, I was informed that about every six months a discharge of "mucus" would occur. This happened.  About a year later this discharge became more  frequent, where I experienced the discharge once per month. Then the discharge happened once per week until it began happening almost every day. Frequently there is blood in the discharg...

I have had an ileostomy for 18 years.  I was diagnosed with UC and was incredibly ill for years hence the bag...  I was told I could consider the j pouch op but after years of ill health and then feeling great finally I decided to forgo more surgery and just live with the bag.   Then last week, I spoke to a specislist about a reversal.  He told me he could join me up without the jpouch and reckons it should all be ok.  I have booked it in for 10 December.  Now I am soooo nervous and really hope I am doing the...

Hi ladies, This may be a silly question but I will ask it anyway.  I have a important event coming up next month.  I am round around my belly.  I know a lot of women out there wear spanx to help with fat.  My question is has anyone heard of a product that does the same thing but you can use it with a bag?  Any advise would be appreciated.  Thanks, Pamer

I'm hoping someone can help me...I've had Crohn's for many years and had an ileostomy done more than 10 years ago. I've recently had a complete proctocolectomy and my husband and I are wanting to start a family. Anyone out there been pregnant? I've heard that fertility decreases due to the crohn's and surgery? What can I expect during pregnancy? Will I be able to care for my stoma myself?Is there any special needs for extra nutrients/diet during pregnancy?

I am curious, do others with ileostomies catch colds or stomach bugs easier after you lost your colons? Do you fatigue easier? I ask because it seems that ever since I lost my colon, I get sick much more often.

Hi everyone,         & nbsp;first time posting, I have an ileostomy since xmas eve 2009. (emergancy surgery). I am 55 year old female and live in Australia. I have gained 30kgs since then. Cant seem to loose any weight, getting a bit depressed about it. Just wondering if anybody else has had the same problem. If you can help me please let me know.          ;      cheers buterfly

Hello! This is my first post on this site. One of the things I was curious about, and am hoping people have real experience and tips for, is how to manage with an ileostomy and traveling, specificaly in New York City? I fear this ileostomy will be permanent for me, and am struggling with a lot of the things this means for me as a young adult woman. As I am figuring things out and trying to stay positive, one of the things I am at a loss for especially is the practical side of it: if you have been to NYC, and know about it, then you know h...

I am 1 year post-op after my ileostomy surgery I had performed at the Mayo Clinic. I still have daily pain from the hernia involved - most days are manageable but some days are very painful. After my surgery, the Mayo Clinic told me I cannot take Vicodin for pain management because it will cause a blockage. I had a particularly painful weekend so I saw my local GP doctor this week and brought up this issue. He sees no reason I cannot take Vicodin - the only side effect might be a "slowing down" of the stool (which wouldn't be a bad thing )...

Hello all! For some reason, I seem to have lost the ability to send private messages on here, so I thought I'd just put my news here. I'm to have an ileostomy on 4th December! Not much fun but I'm looking forward to spending much less time in the bathroom when it's all settled down! Got my pre-op appointment on Saturday afternoon, and a meeting with the Stoma Nurse next Tuesday. I've got loads of questions whirling around my head & writing them down as they come to me! Any advice as to questions I should ask will be very welcome! One t...

Hi There, Just thought I'd introduce myself and ask a couple of questions. I've been reading the forum and I have found it SO helpful and SO uplifting. Thank you for your kindness and openness.  And now I will reveal what a spaz I am ;) I am a 40 year old female, generally healthy but last year got a horrible attack of acute diverticulitis (7 hospital stays, an abscess, a perforation, etc). I had seven inches of my colon removed on 11/30/17 and though surgery was supposed to be laproscopic and not require a stoma, I woke up with an...

I'm going blind (and not finding what I know much be out there) looking at the websites -- so maybe someone can lead me in the right direction. I'm interested in getting a support belt. Not one of the narrow ones that attaches to the pouch and just holds it down better against your body. Something wider (hopefully not too cumbersome) that goes around the body, supports the abdominal area, and accommodates a vertical ileostomy appliance. I'm fairly active but have never had great abdominal muscles and was told and retold about being c...

Does anyone have problems with making the underneath part of this bag (the part that attaches to the skin) last 3 days like they're supposed to? I do! The stoma nurses/doctors say that seeing a white line around where the bag is fitted after a day is normal, but I think It's a constant worry, because after just hours of having a fresh one on, it feels as though it's going to crinkle or tear. So I check it out and ruin the seal to make sure it fits well enough to last 3 days. I have recently changed the type of bag I'm using (just yeste...

Ileostomy due to rectal cancer surgery here - just 4 weeks in.  Still getting used to stuff. Some days it's like peanut butter, but for the past 2 days it's been complete liquid.  I know this is based on what I eat, but I had lots of pasta yesterday so I'm worried about the output. MAJOR MAJOR gas too!  I'm going to try the marshmellow and BEANO advice you've all given here. Is it always going to be inconsistent textures like this?

I am scheduled for a colonoscopy on Thursday and pretty confused.  I still have my colon, but due to abscesses on my colon and a fistula, I was given a (temporary?) ileostomy. Trying to get a correct diagnosis.  My question is: why do I need to do this movie prep and fleet enema when my colon should be empty from all the testing they did in my two week stay at hospital. Also, can anyone advise me on what I can eat that won't go right through me so fast. I eat bananas, breads, pasta, pectin jelly beans, crackers, peanu...

Hi all, Fairly new to this site, not too sure if I am in the right place, just wanted to know if there Is any info or what is every one's take on salads, that seems to be the one thing I miss Not eating, has any one here ate them and if you had any problem like with the lettuce. Thanks for any input.

I am trying to find some sort of diet regimen that will result in weight loss that will work in harmony with my food limitations with my ileostomy. Most standard weight loss diets require a lot of fresh fruits and vegetables. I have discovered (over the past 30 years when I had my ostomy surgery) that I am extremely limited in what I can eat in the fruits and vegetables department. Too much roughage causes blockages at the ileostomy site and results in leakage from around the wafer. Please help!

Greetings! I'm asking this question on behalf of my husband who has been an ileostomate for 10 months now. While he's adjusted admirably, there is one issue that is ongoing and causing him quite a bit of stress. It seems that everytime he removes a bag in order to replace it, his stoma will expand. We aren't sure if it's the air hitting it, or if it's because he does it immediately after taking a hot shower. The problem is that once the stoma has expanded, he must cut a hole in his replacement bag that is big enough to accomodate it, but...

Has anyone had an ileo then gotten a j-pouch made and been reversed? I have a preop visit with the surgeon in a few weeks and am pretty nervous about the coming surgery. I want to know what I am in for. I'm not thrilled about having an ileo but in some ways its not so bad

Hello all I have had my little friend since December 2011. I did think it was hard enough finding a fella as a single mum but this makes things that much more harder. I met a guy on a dating site so have had the chance to get to no him and him me before meeting. Well the time has come to bite the bullet and will be going on a date tomorrow night. The only thing im worried about is telling him about my stoma and have said from the start that I would tell who ever I go out with about it just after the 1st date. Not sure if that's the right...

I have had my ileostomy since 1991 when I was 19. I am now 42 and have started having open wounds develop on the skin immediately surrounding the stoma starting about a year ago. I have never had this occur in all these years. These wounds are not being caused by any excoriation issues, changes in skin care products, my hygiene routine, etc or anything else I can possibly think of. I am a registered nurse and have very good hygiene and take exellent care of my stoma and use well-fitting appliances. I do know how to properly care for the wo...

I have never suffered from back pain until now.  I am now 4 weeks post op and find the littlest amount of walking and/or standing causes me terrible back pain. Even when I'm sitting down I must prop pillows behind my back to avoid the pain and discomfort. I'm wondering if anyone else had this problem post-op.  I'm hoping this is maybe because I had a large incision cut down my belly.  Any input is appreciated.  I

In 2008 at the age of 20 I inherited a neurological disorder that caused 15 daily BMs and a constant fecal smell. Other than nerve problems of the internal sphincter, my health & fitness were excellent.In July 2013 I got an elective sigmoid colostomy. I still smell like feces and have been severely bloated since surgery. I'm very lean and barely eating but have a huge stomach most of the time. Its extremely uncomfortable, to the point where I can barely sleep at night. I irrigate twice a day just to get some relief from the pressure. A...

I've been having problems with my ileostomy for well over a year and been in and out of A&E with severe abdominal pain several times. The A&E doctors only seem concerned that the stoma still has output. It stops working while I'm having the episodes of pain but there is always eventually some output. Once output resumes I'm treated as a pain management case and turfed out home again. I'm taking Oramorph when in pain, Ondansetron for the constant nausea and Lyrica twice a day. Bloods are normal and I've had a standard abdominal x-r...

I had surgery 2 weeks ago. Besides just feeling numb, I can't shake this overwhelming feeling of fatigue. Will it get better? I would have posted this in forums but don't know how? I click on forums but nothing comes up to post on. < >

Hi Guys ........ It looks like I will need to make a decision before long as to whether to have an ileostomy or a colostomy which I will have to have for the rest of my life .....(currently have an ileo...)  I am fortunate enough NOT to actually have any 'bowel problems' per se as do many of you, but wondered if anyone out there had any experience of having both? What are the pros and cons, which is the easiest to manage etc etc....  Also whether or not to have my rectum removed? How does that feel? Would be grateful f...

Hi all, What are others experiences of flying in the UK with an ileostomy? The specialist assures me it is safe to fly, but why do I get the feeling you have to have been there to really know what it's like? I'm due to fly next month (internal flight) but am a bit concerned about security checks - presumably my device will show up on the bodyscanner - am I then asked to step into a door for further examination? I have a card from Charter Healthcare explaining that I wear a device and that it must only be examined in the presence of...

Hello everyone. I have recently been told that my bowel resection/reversal is likely to be in September this year which is earlier than I thought. Great news but less time to lose weight before surgery. surgeon says it will make things easier - want to lose weight gained recently in any event. In the past prior to ileostomy and gastro problems had a lot of success with Slimming World which essentially for those who don't know focuses on excluding fat, sugar and refined carbs eg white bread. Not necessarily low carb as can have rice, nood...

I know that cooked spinach is a bad idea with ileostomy, I was wondering if anyone had tried spinach dip? There is some in the fridge and it is looking very good.

Hi I just had the ileostomy but im finding it leaking. Is this normal ?

Hello my Ileostomy bag keeps filling up with water been doctors they gave me dirolyte and immoduim but nothing working. Can someone help me please ?

Hi there,  the last few days I have had this horrible feeling the way that I felt pre surgery when I had constipation. I have been taking tramadol due to abdominal pain and Im wondering if this could have caused constipation. Is it possible to have constipation with an ileostomy?   Thanks, Hannah

I just have been diagnosed with recurrant bowel cancer, my question is has anyone got a ileostomy and a urostomy. this might be a question that will have to answer to if i get the option after my pet scan results. I would like to make an informed choice on this matter. If i'm lucky enough to get this option. As it is ,i will be getting my whole pelvis cleared. Will it be worth it? Can anyone help me?   PLease  suzy x

Yesterday afternoon, shortly after lunch, I was surprised by a sudden blockage. I was so busy that I didn't even realize that I had no output ALL day. It was 3:00 pm. Cramping, nausea, pain, and belly distension had me paralyzed in pain. This was my first obstruction that was not post operative adhesion related so I was shocked but not scared. I massaged the area. Drank hot tea. Prayed. Cried. Moaned. Then crawled to the phone, went to the pantry, grabbed a big syringe that is really used for cake decorating, a plastic cup, and crawled...

Here's my question does any one have the first two condition's and do they use Metamucil?  I was just wondering if I should start using the Metamucil again, would it help with the diarrhea and or what other benefits that I might get from using it. Thanks a bunch Terr

I have had Norman for 2 1/2 years now and appart from the occasional urge to pass mucus which I was pre-warned about, have this week been for a pooh twice!!! It is real pooh, the same colour as it used to be, and I am quite concerned. My stoma is working but at the same time this has happened?? I have had stomach aches a bit like the old monthly pains and my back has been hurting but why is this happening. I thought that when I had the ileostomy the tube was cut and one end was formed to make the stoma and the other end is sewn in undern...

So, I posted once before about the constant back pain I now have since surgery. Well, at my second follow-up I brought it up to my doctor who "assured" me that he's never heard of such a thing.  Am I just crazy or aren't there plenty of you out there who now suffer with back pain.  I should mention I have an ileostomy.  Needless to say, Christmas shopping has been just about impossible because of the back pain.

Hi all. My mother was recently in a head on car accident (oct 03 '14) in Spain - visiting from the UK for a friends birthday - and it resulted in her having some of small bowel removed under emergency conditions due to heamoraging, I am here to find some advice for her. She now has an ileostomy from this surgery (05 oct). After about a week in ICU she is now in a *normal* room with her husband staying there. She has been told she can have a reversal with in the next week, this seems VERY soon to me, she broke her right arm in the acciden...

Greetings to All.... I am jotting down and seeking help on behalf of my beloved Aunty.     My Aunt is 52 yrs old who has undergone major surgery due to ovarian cancer in the year Aug 2013 and was under chemotherapy.Due to obstruction, On Feb 26th 2015, she underwent ileostomy surgery where she got her stoma. After the surgery, Again she was on chemo but that didn't help much so the chemo medication was stopped.For two three months her recovery was smooth and her stoma was functioning well. Suddenly in the month of June 201...

Been lurking for a month and want to give Kudos to all for sharing their knowledge and experience. Back in the first week of May I had bleeding diverticulosis and after the first surgery there was a leak that caused (for the life of me I can't think of the word) an infection which required a second operation to drain the area that resulted in the Ileostomy. So last week I met with the surgeon that will be performing the reversal and I'll be meeting with him the beginning of September to schedule the procedure. But after reading all the ...

I had an ileostomy Feb. 2nd colonic inertia and pelvic floor issues. Before the surgery, I was probably a little over-the-edge with saunas because I couldn't stand the thought of what was happening with all the toxins since I was only able to go to the bathroom every couple weeks or so. Now, I'm noticing a bit of a muffin-top starting and want to nip it in the bud. I would like to do my workout and finish with a sauna. One of the ostomy/wound nurses told me to be careful with hot water or the heating pad because I could scald the stoma. I ...

I am having my first colonoscopy this week and I have an ileostomy.  I dont understand why they have mailed me the golightly and pills to take after I heard that someone with an Ileo should never take laxatives. Isn't it dangerous to drink a gallon of that vile demon liquid?

Hey guys. I have had my little friend (I call him sammy) for 8 years and was out on a very strict moderate fiber diet. 8 yrs later I'm still trying to figure out what I can and cannot eat. For example...i love honey roasted cashews...can I still eat a bit at a time? What about sourkrout? I have found that, with moderation, I can eat a lot of things on the "no no list."   if any of you can let me know some of the foods on an diet for someone with an ilieostomy as well as what to avoid that would be great and I welcome different r...

Hi all.  Looking for feedback from anyone who has had a reversal or is being considered for one.  I am 3-1/2 months post ileostomy and my surgeon has said I am a candidate for a reversal.  He wants to scope me next month to make sure everything "looks good and healed" and if it does he plans to do a reversal in March which will put me at 5 months post ileostomy.  Originally he told me six months minimum so this caught me off guard.  I'm nervous because I don't want to rush into so...

I am 9 days after surgery. Nothing could have prepared me for this. The pain, not feeling well, the constant trips to bathroom. Its hard work. I have had leaks and dont know why. Not being able to do much for myself. They kept telling me in the hospital "your doing great, your doing great". When I got home totally did not feel like Im doing great. My ostomy nurse ordered me supplies and now I have so much stuff I dont know what is what. I am extremely overwhelmed and feel so alone.

I have had a permanent Ileostomy for 18 years and have very loose bowel movements..I empty often throughout the day and night and have always dreaded the putrid smell from contents which would literally stink up my bathroom for hours regardless of how many times I would flush toilet or use air fresheners.. a couple of months ago I Googled anything that may help and found a Hollister product called M9 odor eliminator drops which destroys odors in ostomy pouches and WOW!! this is amazing stuff I put 8 drops inside pouch ater each empty and h...

Hi Everybody I am new to this page and I have some questions regarding the weight gain/loss after an ileostomy surgery. I have crohn's since 2009 and my first ileostomy surgery will be within 3 months. The idea is that it will be for 6 months but i have been warned that it might be permanent. Never had an issue with flare ups that i lost alot of weight. Maybe 1 or 2 kg at most. I I do have problems with maintaining my weight, especially after the long term prednisone i had 3 years ago. Gained 10kg and only lost 2kg of those. Permanentl...

My ileostomy output is sometimes thick, sometimes thin and sometimes like water. I'm used to that, and I know that foods can affect the consistency. But I also have noticed that sometimes the output seems what I might call "blended"--a smooth consistency--but a lot of times it just seems like chunks of various sized pieces in a watery base. Is that typical? Has anybody else experienced this?

Hello,<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" ; /><o:p></o:p> <o:p> </o:p> My mom has an Ileostomy since October this year. She have many feces fluids with any bowel movement which cause leakage, any diet tips to reduce those fluids?<o:p></o:p> <o:p> </o:p> Thanks,<o:p></o:p>

Hi Iam new here, had my ileostomy a yr ago, I'd like to know what we can really eat, does anyone have a good diet to follow. I love salads but afraid to try them, was wondering if anyone has, and how it worked out. thanks

Anyone on here got a child with an Ileostomy ? My son is 13 and had his when he was 11. We dont know any other children with one and we just muddle along and get on with things. Im worried about his growth, he is tiny. He is nowhere near puberty and all his mates are now big strapping youths with deep voices, spots and attitude ! The doctors assure us puberty will come but it will be years behind everyone else. Im also worried about how he will cope when girlfriends come along and all the usual teenage fumbling that goes on. The stoma nurs...

I am angry, embarrassed and I don't understand. Whenever I have been to see my GI doc, who I have seen since 1988, and love him dearly, I'm asked how I'm doing, number of poop runs per day, eating, you all know the routine. I have always answered very honestly. When I'm asked about " any problems you have?",I tell him yes I have stomach cramps, chills, a squeaky sound on my right lower quadrant after I eat. I cuddle up with my pal the heating pad and a cup of hot tea until I fall asleep or the pain subsides. The Docs answer is a...

July 3 i seen my dr for a check up every-thing is ok . After exame he gave me my opptions                  &n bsp;       &nbs p;  1) do nothing         & nbsp;       &nb sp;         ;   2) remove rectum stump sew up anus        &nb sp;     ...

Hello    I'm considering having my gall bladder removed, and would welcome any information from ostomates who have had this operation. I have an ileostomy (no large colon at all) and am interested to hear others' experiences of how the constant flow of bile affects digestion and output etc. If anyone has any tips on how to avoid gall bladder removal, that would be brilliant too! Thanks, Linda

Have a temporary Ileostomy which is scheduled to be reversed in January. I've had a bunch of problems with leakage, ended up going with a Hollister wafer for low profile stomas along with high tension on the ostomy belt and that really seemed to help. After that I started having issues with leakage between the wafer and the bag. Started using superglue to hold them together and it worked with minimal results then tried ostomy paste and so far no leaks. Still having some leakage issues. At night often times I'll wake up and the bag will ...

Hello everyone, I've not been on here for such a long time. Last time I was on here my boyfriend was facing the prospect of stoma surgery back in the summer, and now here we are, 5 months later, with a very special little friend we've affectionately named "Rocky". Having Rocky in our lives has changed everything. Mostly, I'm pleased to say, for the better. My boyfriend has adapted to life with an ileostomy amazingly well, with very few down days (which are only to be expected from time to time). I just can't believe how differ...

I am new to this forum.  I had an ileostomy for one year and just had it reversed in August of 2014.  I am having a difficult time and would like to meet individuals and have them share their experiences with me.  I am seriously considering going back to the bag as I definitely feel that my quality of life was better.  I should have done more research on my own.  However, my surgeon explained as if it was a simple:  five to six BMs a day controlled with imodium and lomotil.  I have learned that it entails...

Has anyone had a stoma prolapse and had to have their ileostomy moved to the other side of their abdomen along with an abdominal hernia?

Help! I've had an loop ileostomy for 4 months (colostomy for 10 months prior to this). I still have a small amount of faecal matter passing through my large bowel and due to the Imodium to slow my bowels done, I am now really constipated. I've tried Fleet Enemas, Microlax, Fleet Mineral Oil, Cooking Oil and water but nothing is shifting it and I'm in a lot of pain. Does anyone have any suggestions?

Hi, I'm a registered nurse that has just started working on  a general surgery unit. I don't have that much experience with changing ileostomy appliances. I had one patient the other night who's ileo appliance is always leaking. Sometimes her appliance is changed 1-3 times in a 24 hour periord. We use eaken to fill in any skin depression in order to increase the seal... The problem is that everytime we change her appliance I run into a lot of problem when trying to clean peristomal skin and removing the previous eaken. It stick...

Hi,  I am heading to Cuba in 2 weeks and wondering if anyone travelling has had any problems with bringing supplies and having to explain your supplies.....Anybody with any advice or travel tips...... Thank you

Hi everyone! I am new to this kinda thing! So i had my operation last August due to severe ulcerative colitis. I was wasn't suffering very long and the fact i had a major operation very quickly was a bit of a shock! I had to have a sub total colectomy and an ileostomy. So far everything is going ok luckily enough! I have a choice of getting the ileostomy reversed later this year. The surgeon did mention to me that it was a more difficult operation & there are complications that can happen. Plus the fact i haven't got much of a colon ...

Hello all! I need some advice. I have had my ileostomy since 10/11 & we are just now getting into the heat here in the South. I was at my daughter's softball tournament yesterday & it was about 90 degrees here in Georgia. I drank ALOT of water & Gatorade yesterday & also ate fruit, but was really dehydrated & zapped from the sun yesterday. I am afraid that I have seem a glimpse of things to come for the summer & I want to know if any of yall have any magic potions or tips for staying hydrated while outside for the d...

Hi I am an almost 23 yr old female who just had to have her colon removed for having severe C.Diff for over 3 1/2 years and it was causing major problems causing my kidney function to go down to low 70's and exreme water retention around 15 lb's. I was wondering from other people who have had there colons removed how much weight they have lost in the 3 weeks after surgery. Different doctors have given me way different numbers but I just wanted to know from some people who actually had the surgery. Thanks Elena

Hi everyone, I didn't think I would have so many problems before and after my ileostomy surgery. Question(s) I have today is what would anyone recommend me eating after ileostomy surgery, they told me liquids at first then move to solids and so on. I am having trouble keeping anything down since I believe they gave me to many medications that make me very loopy and not me at all. These medications have made me sick and not wanting to eat and throw up the majority of the time. What do u all sujest I can eat or drink for now. I don't really ...

I have ostomy on my left lower abdomen. For the last year I have been experiencing a burning sensation from left hip bone to left edge of ostomy. No pain but the burning at times is very uncomfortable. I have a nice size raised area underneath the sticky portion of my wafer hence making the wafer on the left side pull away from my skin and having to change it. I seem to be changing it every day where as before the 'hernia', I would change every 5-7 or 10 days. I have a GI appointment at Walter Reed/Bethesda Aug 28th. I don't know if the do...

Me again.  I keep writing because I find myself so lost in this whole thing.  Question for anyone out there that has undergone ileostomy reversal.  I've been told if all goes well and I heal well I should be able to undergo ileostomy reversal in 6 months but before that I will have to successfully complete a defecating proctogram.  Because my rectal muscles don't work real well I did not do well taking this test prior to surgery.  I'm wondering if anyone else had to take this test and/or ho...

Hi all.  Been a while since I've posted.  On March 4th I finally went in for my reversal.  Since that time I've been incredibly sick.  I've lost 10 lbs.  My nausea has been the worst ever and I've got constant abdominal pain (not surgical pain but gut pain).  To top it off, unlike most who undergo a reversal and suffer with diarrhea, I am incredibly constipated and unable to go.  I was just hospitalized again for extreme dehydration and vomiting.  I have no des...

Hello everyone,  I am asking a question about the skin around my ileostomy.   It is quite red and sore.  It looks like it is irritated where the stiches are starting to disolve but it is really burning.  My first stoma used to be about 1 1/4th inches but the stoma nurse told me this one is a little larger, about 1 1/2 inches.  I am not sure if I should be cutting the skin barrier a little smaller or not.  If I put the wax ring over the sore skin it will really cause a problem when I remove it for changing. &nb...

Hi! I am 28 years young. I am schedule for a total proctocolectomy with ileostomy in a few weeks. I have had enough of dealing with ulcerative colitis and i have decided it is time for a stoma. Obviously, i have a lot of questions of what to expect. One main question that constantly pops in my head constantly is, will my quality of life really improve? UC v.s ileostomy?

I've heard a colostomy output is a less watery, but that's about it. Anyone knowledgeable on this?

Would like to chat with anyone who has had a continent ileostomy.< >

Hi There! First of all, thank you for taking your time out and reading my post. I had an emergency operation of tuberculer intestinal obstruction and 3 feet of my small intestine was resected and ileostomy was created. One night I felt something weird (like a shock) near my stoma something like my intestine is pulling inside and whenever this happens gas came out, discussed with many doctors all respond as normal and I was convinced as my intestine was stiched in my abdomen so when my intestine moves I felt in my abdomen.  But after h...

Dear All, I have a partial gastretomy and an ileostomy for almost a year now. I live in the UK. Recently I have started to throw up a lot. I don't know what best to eat or drink. I wonder does anyone have a similar experience and if so could offer some advice? Thank you very much in advance for your help. 

I'm having debulking surgery for ovarian cancer in a few weeks and need to prepare for a very likely ileostomy. I don't think the one-time visit with a stoma nurse pre-op is going to cut it. I want to be prepared before I go under the knife so I know what kind of food and supplies and incidentals to have on hand when I return from the hospital. From what I gather, I'll get some "lessons" in the hospital and by the handful of visits by the visiting nurse, but I think I'm not confident this will be enough. Thanks in advance.

Hi: I am a 53 year old woman who has had an ileostomy since January 1996 due to ulcerative colitis.  I haven't had too many problems over the years expect for a few blockages due to bad food and taking codeine for a toothache pain.  But last month (October 2010) I was diagnosed with breast cancer.  Thus I have 2 questions: (1)  I am worried about the side-effects of the upcoming chemo, meds and radiation treatments.  Has anyone else with an ileostomy had breast cancer, and/or can anyone rec...

Hello all.  I am new to this and would like to introduce myself and my concerns.  I am the fiancee of a 46 yo man with a permanent ileostomy.  He was diagnosised with colorectal cancer last Feb.  He underwent chemo and radiation to shrink the rectal tumor, but it was not affective and the cancer spread everywhere.  He had extensive peritoneal carcenomas.  He underwent emergent surgery in June 2010 for debulking and removal of the cancer.  After a 14 hour surgery they end...

Does anyone have ileostomy & Diabetes?  Difficult to stay on a diabetic diet because of foods cannot tolerate due to the fiber.  Any suggestions? Would like to talk to someone like me.

Can it be reversed? Ive searched and searched for any info on it and i'm coming up with nothing.  I'm OK with living with the bag I just didn't know if maybe sometime down the road i wanted to reverse it, I could? Anyone know anything about that?

Hi everyone, serious newbie here. I am due to have an ileostomy in a few months time. I have had a stoma for about 15 yrs due to having an ACE button. But having an ileostomy bag is scaring me to death, although I know it's going to make my life easier and hopefully I will be able to start going out and about again and not be tied to a loo for hours on end! I was just hoping if anyone can tell me the sort of things to expect after the op..whilst still in hosp. And also how long it took people to get the hang of dealing with "Fred&q...

How often will I have to empty my ileostomy per day? I know it's different for everyone, but hoping to get a general idea. Also, will I have to set my alarm at night to get up and empty it several times a night? I have surgery March 21, 2014 to get an ileostomy. I am not thrilled. :-/

Just got my ileostomy yesterday. And oh my stars! It is noisy! I hate it! When air passes through it, it literally startles me because it's so loud! And it's so embarrassing! I don't see myself going out in public with this noisy thing... EVER! Does anyone have any tips/suggestions for sound-proofing???

Hi all! I am a 48 yo male and am one week post ileostomy takedown. I had a temp ileostomy for 5 months due to a bowel resection for diverticulitis. I read many horror stories online in my quest for information and i have to say I couldn't be happier with the way things have turned out.I had my surgery on Feb 19 at 8:30 am and by midnight I could feel my bowels starting up. The sounds were incredible as the old boy kicked into gear with minimal discomfort. Soon after this I passed gas for the first time in 5 months and it felt great! At 3:3...

I currently have an ileo-anal anastomosis and will be having elective permanent ileostomy on Oct 26.  I had a temporary ileostomy back when i had my first surgery 30 years ago.  I remember how liberating it was after 3 years of full-flaring UC.  I look forward to the full liberation again as i've suffered a very painful fistula for 29 of the 30 years.  I've just bore the pain but now that the nest is empty, i'm finally taking care of myself.    My question is, will i need to alter my eating habits and/o...

Hi there,< >         &n bsp;       &nbs p;  Just a tip for those people with a Loop Ileostomy or a de-functioning J-Pouch ( my configuration ) . In the Stoma there are two openings, one going down to the Anus and the other exiting into the bag. Being flat in bed allows the liquid to be sucked into the wrong exit...ie..going to the Anus instead of out and into the bag. This situation causes copious amounts of fluid to exit the Anus , without any warning...very d...

I'm sure this questions been asked many times.... As mentioned on my profile I've put off getting the Reversal done for around 5 years.Aside from being a bit unsure of the outcome there were other circumstances too,unfortunately. I was to get it done about 2 years ago,but my dear Wife of 16 years,Tracey was rediagnosed with Metastatic Breast Cancer in June 2014,but this time it was through her bones.Straight off they said it was terminal and to expect up to 5 years She put up a hell of a fight,had 3 different chemo treatments,along with...

Hello,  I am new here, but not new to digestive malfunctions. It's finally come time to say goodbye to my colon and at this moment I'm not too sad to see it go.  I can no longer go to the bathroom on my own and my pelvic floor is all messed up from 16 years of colonic inertia.  So now I'm going to get the colon removed and getting a permanent ileostomy.  I cannot be considered for reconnection because my pelvic floor is too far gone.  I'll try biofeedback again after, but it's not looking good.  I'm here to...

I have a loop ileostomy and had the surgery due to dymotility of the gut and pseudo obstruction( no longer had any peristaltic wave to move things along ) this happened after two lots of major surgery on my spine done through my abdomen. I had the surgery done one year ago this month. The problem I now have is that I have a buildup of mucus in my back passage fairly high up and can't get it out,when I lay down I can feel it and feels like in need a BM and is quite uncomfortable, But when i sit on the lavatory the feeling completely goes an...

Hi all! shoulda posted earlier but here I am. After four months with an ileostomy (laparoscopic partial colectomy ended up being open surgery and woke up with a bag), tomorrow I am getting it reversed. I am scared and anxious, mostly because 1. The two big things that could have gone wrong went wrong last time and 2. I have read nothing but horror stories about the procedure. I had severe diverticulitis, had suffered for a year, had an abscess and perforation, spent Xmas 2016 in the hospital and spent Xmas 2017 recovering from surgery. ...

I recently had surgery to remove my entire large intestine, the surgeon then joined my small bowel to my rectum.   I am trying to balance the food/liquid problem because my bum is suffering from trips to the bathroom 8-15 times in a 24 hour period.....ouch!   Can anyone share info on vitamins/minerals etc that might help replace what i'm losing.

Surgery a few weeks ago reconnected my colon eliminating an colonostomy but resulting in a temporary ileostomy. I've been seeing my medications (full pills) spilling out of my bag. I've switched to liquid ibuprofen and acetaminophen which seems to be attacking the pain- but other meds don't come in liquid form. I'm wondering if others have had this problem and what if anything you've done to ensure the medications are getting digested. I'm also concerned that vitamins are being lost too. As a side note- the surgery included a hyserectomy...

hi some1 must be to give me some advice, i had my operation september 2010, i get phantom poo pains on a daily basis but the last couple of weeks i felt more severe cramps and pain.  usually just mucus would weep from my bottom but now it seems its actual poo in my passage, i have tried to strain but the pain worsens and gets un-bearable and bleeds, has any1 had this problem? if so what did you do?,,,, awaiting any advice thanks in advance geordie casper

I've had my Ileostomy since November 2005. Everything has been going fine with the Ostomy EXCEPT. I seem to have reoccurring kidney stones. Has anyone else experienced the same problems? I drink plenty of water and try to watch what I eat but I still keep making them. Right now I have a stone (size of a peanut) in my right kidney. My Urologist  just completed blasting and clearing my left kidney with a stone about the same size. We are getting ready to start working on the right kidney. Any comments?

I purchased a urostomy container so I can plug it into my ostomy and empty at night. I think the tubing is too small and it won't work. Are there night drainage devices for an ileostomy?

I am new to this, so I will tell my story and then see what comments are  made. Ok, well back in 2011 I was diagnosed with cervical cancer so I started chemo and radiation. I had 35 radiation and 4 weeks of chemo and also 4 internal radiation. went back to work felt fine even thru 2012. well Jan. 3 2013 my stomach started hurting severly went to dr they thought it was gall b ladder so they took it out. well I still was hurting so I ended up going to another hospital, I was there 9 weeks. They said from radiation that between my s...

hi, i just wanted to introduce myself and ask a few questions. Ive recently had surgery and have been left with (i hope) a temporary colostomy, im still trying to recover from the surgery and having a lot of concern about living with a bag. i know it will be difficult at first. i work full time, but have been off sick for 6 months already. im extremely concerned about how this will effect my work, i work in close proximity to lots of people and have reservations regarding the noise/smell from the bag. does anyone have advice about this? i...

Hello all you good people out there -- Has anyone had to have an ileostomy because of Radiation Damage? In January 2012 I had a major operation for Cancer. The operation was successful and the tumour removed from my womb. THEN I was advised to have Radiotherapy just in case?? ---I had six weeks every day Radiotherapy and started to complain of symptons from the second week. Uncontrollable diarrohea, abdo pains etc but each time told they were just side effects and would subside in time. 9 months later, no different so they sent me for a ...

 Hello   Post prednisone medication I have been experiencing rather severe joint pain. Has  anyone else experienced this? If so, can you explain why this is happening and how long I should expect it to last? Thanks   Dale

I want to know how to do the dating thing with an ileostomy  I am looking for someone who does not care if I have one...My husband left me last year after I had it for two years...I don't know how to go on from here...any suggestions..

Hi there,  I've had an permanent ileostomy for the past 9 years and have adapted really well.  It has freed me up to be able to really enjoy my life.  In fact, I have checked off 8 of my 10 bucket list items (involving mostly travel).  I am also a Big Beautiful Woman, 200+ and 66 years old.  I don't have any other health issues.  Having been a BBW for the past 30 years was not an issue for me when dating or marrying.   I always managed to find men who adored me.  However, I am now widowed, for the p...

Does anyone here have a continent ileostomy? I have had one since 1980, having had a conventional ileostomy for four years and deciding to have the conversion. I realize so much has changed in the options available in the last 38 years, but I was just wondering if anyone else has one? 

What does an Ileostomy blockage feel like?  I am experiencing really painful cramping on my upper right side of my stomach, across from my stoma.  The area around the stoma is very tender and sore but not like a skin rash sore. It is more deep inside.  Thinking it was a blockage,  I switched to liquids for a day but the stoma is putting out material into the bag.  When it empties, it is really crampy though.  I have been extra careful with my food, chewing well and not eating things that I thought would cause ...

I had a loop ileostomy 2/2/2017 because of colonic inertia w/ pelvic floor issues. Knowing what I know now, I would have questioned why they didn't remove the colon and do an end ileostomy at the time. We knew it would not make sense to do a take down because of the other issues, plus I'm nearly 65 so living with the pouch is easier than what I have gone through for so many years. None-the-less, it was done and I realize they were trying to be conservative. I was told the bypassed colon would continue to produce mucus and to expect it to p...

Ok, before my op I did not have abs of steel. Had the mid-life lady body type where every extra ounce went to the midriff and my activity level would never give me a six pack. So I was middle soft with a little muffin top. But now ... I definitely have abs of mashed potato. Any other ladies (or guys for that matter) notice that it seems as if the removal of the colon left an 'empty' space that is rather foldy and soft? Kind of like a stuffed toy with some stuffing removed . Cute thing ... I mentioned this to hubby who promptly replied ...

I have a question that I am hoping someone can answer for me.  I first had a "straight-thru" (small intestine hooked directly to anus) sub-total colectomy done in 2009.  this didn't work out for me because I was having 15-20 bowel movements per day with lots of "butt-burn."  I decided that I had to have an ileostomy and had it done in Nov. 2010.  Actually ever since the sub-total colectomy I have a "morning leakage problem."  When I get up in the morning I am c...

Hi all i have ileostomy since 1981 now i have been told i need a urostomy!.Has this happened to anyone else Dwyer

I had my colon, rectum and anus removed due to a diagnosis of FAP, but now they are saying that I have hundreds of polyps in my duodenum.   Is there anyone else on here who has FAP and any problems with their duodenum?  I'm trying to figure out my options but the surgeon I spoke to seemed clueless when I mentioned the PSD surgery over a Whipple.  It was rather frightening to see that I might know more than a surgeon. But thankfully I am not opposed to traveling elsewhere to get an informed 2nd or even 3rd opi...

     Hi my name is neil I have a colostomy since August 2013 I have a large lump its  hernia which is causing pain and discomfort and leaks the surgeon said he will fix the problem wants me to irradiate if that dont work as my colon ant in great shape he will give me a ileostomy dont know how well irrigation will work or how much more work a ileostomy is if you can help with anything

Have any of you folks had any trouble with losing large amounts of hair after you had your ileostomies?   My hair is falling out by the hand fulls.  The doc did check my thyroid levels and found my T4 to be 40. She raised up my medication and added a new med for the T3. She thinks it may be a problem with absorbing the drugs.  Did any of you have this issue?  How did you work with this issue?  This is very distressing to me because I have always had very healthy hair and no issues such as this.  Any suggestion...

Hi everyone I've had an ileostomy for the past 7years with lots of surgery since then. I've recently found out I'm pregnant 'about 6weeks'. I'm having a lot of problems with pressure on my back passage and even faceases coming out every day, which isn't usual for me so it's extremely uncomfortable. I just wondering if anyone knows if it could be related to the pregnancy even tho it's so early on? I'd be greatful for anyone's advice. keep well ostomates ❤️

It has been 5 months since my ileostomy and I am now having abdominal pain just above my belly button.  It really hurts when I cough.  I first thought maybe a pulled muscle but now the pain is getting worse without coughing.  Has anyone had this problem?

Annual check up the Dr stated time for colonoscopy.  My concern is the prep and getting dehydrated.  Anyone have this done and is there a different prep for us?  Only one large clinic in town that does them, called there and they called back and stated prep is same for almost everyone.  I have this nagging doubt so thought to bring it here in case it can help others as well.

Hi, I'm new to this site and would appreciate some advice from people who have had ileostomy surgery. I would like to know anything that might help me before my operation. Is it extremely painful? Should I stop eating beforehand? How long is the average hospital stay? I would be grateful for any information. Thank you and I appreciate you taking the time to read this and reply.

Have ileostomy. Still have colon. Sometimes still have small rectal discharge (poop), usually very liquid type. Surgeon said its normal due to colon still producing mucus and poop. You would think the medical field would make you aware of things like this. But they don't. Just about all ileostomy people have a discharge if they still have colon. Hope this helps someone.

Morning of Sept. 27/16: early morning had abdominal pain, vommiting; this continued to get worse over morning. By early afternoon, my wife (retired r.n. for 38 yrs.) called ambulance; could see motteling in extremeties; skin was cold & clammy. At hospital; blood work was elevated and lactic acid over 500. As afternoon went on, no control over diarrhea (couldn`t change diapers & sheets fast enough) From tests/scans surgeon thought to do with bowel. He didn`t think would make it to morning if didn`t have surgery . He thought going in...

Hi there. Can anyone comment on using a CPAP for sleep apnea with an ileostomy? I am having some problems and wonder if it is just me? Thank you! maryellen

Hello This is my third question to this forum since I found it very useful and so many good people offer great advices. As communicated before, my mom had a TME surgery (permanent ileostomy) about six weeks ago; currently my mom is still hospitalized because the hospital ostomy nurse didn’t manage to fit the right stoma appliance which caused a serious leakage and skin burn. Yesterday our surgeon told us that looks like my mom will need a second operation to relocate the ileostomy because the skin is not improving and thus the ostomy ...

I have recently had an ileostomy for chronic constipation caused by extremely slow transit. I actually ended up having three bouts of surgery in the space of five weeks, but that is by the by. I know it takes about six weeks for the stoma to settle down to a pretty constant size. The problem I am facing is how 'snug' should a 'snug' fit be? I have had so much conflicting advice from the medical profession.  It has to fit exactly, it has to have 1mm gap all the way round, it has to be given room to move etc etc. I just want to know w...

Hi all,  I have posted before and I have to have the rest of my large bowel removed due to a severe stricture along with severe motility issues which have caused me to be on TPN and do not allow my colon to work.  I know I have to get this done in order to get off the TPN and try to lead a more normal life and be able to eat again. All my doctors and friends have said I should get this done, so I will be getting my surgery date when I see my surgeon on Thursday July 1st.  Because I have had so many complicatio...

I need some advice on what to expect and encouragement.  I have crohns disease which was very active in the decending colon and rectum. I had a permanent colostomy formed and my decending colon and rectum removed with the hope that it would cure all my problems.  My remaining tranverse colon was deemed to be unaffected by the crohns.  That surgery was two years ago and since then the crohns has appeared in my remaining colon and I also have a severe parastomal hernia which is painful as I believe it is restric...

So in March of last year, I had surgery to have a total colectomy with end ileostomy. I was told that since it was a final determination of ulcerative colitis, that I could later on have a reversal if I wished. I'm looking to get information from anyone who has had this done, or knows someone who has, to get information regarding this process. I know that if I do have the reversal done, it will be a two surgery process, first to create a small pouch with part of my small intestine, and the second to reconnect the small intestine to the rec...

Hi everyone I'm new to this site and would really appreciate some tips on ileostomy high output. I had an emergency operation 10 weeks ago on the 17th of March and woke up with a bag stuck to my stomach. My stoma nurses have prescribed me 48 mg of loperamide which I take daily 30 mins before eating. The out put is so inconsistent I can empty the bag 20 times a day on a bad day and 3 or 4 times during the night which just leaves me exhausted the next day and also makes me feel so low. I would really appreciate some advice on good foods an...

I am on quite a few medications, including several that are timed released. After asking my pharmacist, I found out that most of them are absorbed in the colon. Since I no longer have a  colon, I am very concerned that I am not absorbing enough of my meds. I see the little white balls of medication just released in my bag...floating around. Do any of you have this problem? Have you had to have any of your meds 'compounded'? My pharmacist has helped very little and I thought since that was their specialty, they would be most infor

Hi.  Had my ileostomy 10 days ago and struggling with my output.  Doctor and ostomy nurse say I should have output of 800cc's a day and I'm having about 400cc's a day.  Doing my best to follow the low residue diet and drink plenty but can't seem to increase output.  Should I be concerned?  Any advice is appreciated.

I'm four weeks post op today and am having the worst day yet.  I've had occasional days of rectal pain and pressure which has usually meant I need to pass some mucus and once I do I have relief.  Well, today starting around 7am I have been in constant pain with pressure and can't get any relief.  I've tried a couple times to sit on the toilet and see if I couldn't push out some mucus and nothing is coming out!!  I am miserable.  The only thing giving me relief today is sitting on the heatin...

I had the ileostomy reversal a month ago I am still feeling a lot of rectal pain and am trying to control my elimination but often have accidents daily.  Does anyone know how long it takes to stop hurting and to get control?  I kind of feel like I have uc again.  I'm glad the ostomy is gone though.

  Long story short:  On April 20,  2013 my colon perforated due to diverticulitis.  I arrived by ambulance to the hospital already in full blown septic shock.  I was in the operating room for 5 hours and then transferred to ICU on life support.  My family was told that if I was alive in 72 hours I might have a chance but they should hope for the best and prepare for the worst.  Five days later I awoke in ICU and taken off of life support.  I spent the next two ...

It's been a while since I've written and here I find myself again looking to you all for advice.  For the past 10 weeks since my surgery my stoma has produced a consistent flow.  However, now in my 11th week, I barely have any output for the past 5 days.  I don't have discomfort or pain, I just don't seem to have much output yet I'm eating more now than before.  I should mention my stoma is recessed into my belly a bit and my skin is not good because of this.  I have been using paste to try...

Hi all. It's been a while since I've written. I am happy to say I've been given the green light to proceed with an ileostomy reversal but I'm nervous as hell.  I've tried to find input from others on this site but find there's not much out there on reversals.  Looking for any advice from those who have experienced a reversal.  Thanks.

I recently changed appliances because my prior appliances were too small for the stoma. I have now been using these new two piece appliances but have found it to be extremely frustrating. The appliances do not properly fit the stoma. This may be because my surgery was performed 25 years ago and maybe the appliances are different today. I would like to know if anyone else is having this same issue. As result of the improper fit, the area around the stoma is red, sore and very uncomfortable/sometimes painful.

does anyone know how this can be treated when you have an acute episode. I've had my ileo for 40 years and didn't have this problem until 20 years ago. I read on this forum that people use irrigation but i wondered if that's just for food blockage. thanks everyone ann

Hi all For the last month+ I have noticed a very medicinal odor that occurs after wearing my flange for 1 day or so;  it actually causes my clothing in that area to pick up the odor as well.  It is not the result of output.... not sure why this is happening and/or what can be done about it.  I switched products (was using Convatec) as I thought maybe I had developed a strange chemical reaction with what I was using but the new company product (Hollister) causes the same problem.  I am planning on calling both Convatec ...

I am on way to surgeon I am constipated and have hemroids I feel like I need to sit on toliet so much pain I can tolerate right now I refuse to take pain medicine cause I know it can cause constipation has anyone had this problem and what did doctor

Been reading loads of great info but I can't seem to find the info I'm looking for.  I had a gastric bypass 15 years ago with no problems. That is until now. July of 2016 was my first lap surgery for removal of adhesions.  All seemed fine until November 2016 when my small bowel got itself into a know forcing removal of about 10".  Two weeks later that repair essentially disintegrated and another 6-10" were removed and I was given my ileostomy pouch. In July of 2016 I weighed 125 lbs and currently struggle between 90 and 100 ...

I am scheduled to have a small bowel series test on Friday, Feb. 17, 2017, and I am very nervous about it! The test was ordered after I had four bowel obstructions in 12 months following emergency abdominal surgery in November 2015. They tell me that if I hadn't had surgery within 24 hours, I would have died. They also tell me that having so many obtructions in a 12-mointh period is very unusual. The last time I was in the hospital (New Year'sEve to Jan. 4, one of the surgeons said she had noticed a pattern: all of the obstructions seemed ...

I'm a new member and also new to my ileostomy (6 weeks post surgery). I'm sure I will have lots of questions as I learn, but I think I'm in the right place to learn. Just wondering if any one else has their osteomy due to Diverticulitis. If so do you have a colostomy or ileostomy? 

Has anyone experienced this after your ileostomy?  If so what are you doing to help prevent them?  I have read in the forum Lecithin might help with the uric acid?

Hello all I have had a permanent ileostomy for 3 years now and was wondering if there is any product out there that allows us to go bag less like at the beach or something . Like a plug  ? Thanks in advance for your knowledge and comments 

Hi, I did taekwondo for nearly four years before I had my surgery. It was pretty much the only sport I've ever done that I've actually been alright at as well as really enjoying it. I was never big on sparring as I'm not an overly aggressive person, but my club did very little contact training anyway. My concern is that I loved taekwondo but I am fully aware of how vital core strength is in general training (i.e. doing any sort of kick requires core strength). Does anyone here with an ostomy do taekwondo or any other martial arts comfort...

Anyone out there with the strange combinatio of ileostomy and Multiple Sclerosis. Am I unique? Belinda, England

Hi,  I am new to the site and had a few questions.   I had to have a colostomy just over a year ago due to a doctor screwing up my back.  I have cauda equine syndrome ( No bladder function and my nerves to my rectum stopped working) Since the colostomy I have had two revisions. For some reason my stoma keeps closing up. The doctor tried to put a scope through it to see what the problem was, but they could not even get the scope in an inch or two. I also have colonic bowel, (very slow moving), but when things d...

Hello, I'm new to this site so still finding my way, that is if my memory...what's that! will allow me to remember where I've been before. However despite all that I have a question regarding quite a large parastomal hernia. I acquired this Ileostomy as a surprise after an operation on my spine. I was told I developed a blockage which caused a rupture of the colon. I did have a good stoma nurse available where I was living when I had the operation but have since moved house and the support I have discovered is nil in this area. My hernia i...

Hi I'm new to this forum and I hope you can help. My son is 21. He has Down syndrome and an ileostomy. In June he will be graduating from high school. His future is filled with opportunities for jobs and community activities. He needs to learn how to change and patch his wafer, so he can pursue these. I would like a professional or paraprofessional to teach him how to manage his ostomy. The training should be provided by a male, in a variety of environments so that he learns to deal with his ostomy in many environments. Do you know of ...

Hello, all.  I'm so happy I've found this website!  My mother who is 79 had surgery last October, and most of her large intestine was removed.  She now has an illeostomy bag.  Since Mom doesn't own a computer, she doesn't have access to any kind of support group, so I'd like to ask a few questions on her behalf. She has been hospitalized 3 times since her surgery, due to blockages in what's left of her small intestine, which is "free floating" according to her doctor.  Sometimes i...

I have an ileostomy since I was 18.  Now at 72 I have been newly diagnosed with bladder cancer which quite possibly will result in radical surgery...the removal of my bladder and reconstructive surgery after proscribed Chemotherapy. The end result may be an ileal conduit or urostomy. I would welcome talking with an OstoMate who has both. Hal

Guess I will start from the beginning. 2 1/2 years ago I had a sudden onset of abdominal pain which got worse over 48 hours. Having no insurance coverage, I held out as long as I could before going to the ER with the abdominal pain and no B/M for over 72 hours. 8 hours after arriving in the ED, I was in surgery and 12 hours later I had a colostomy. I will give a blow by blow in later posts but after an unsuccessful attempt at reversal last September that resulted in an ilesotomy I was completely and totally depressed. Last Thursday my ...

Have any males had to have a Prostate biopsy after their rectum has been removed and if so, how was it performed.

Hi folks, I was a newbie to the site last year when I underwent an emergency Ileostomy and the doctors were surprised that I had no prior symptoms or illness other than the ones I presented them with on the day.   I havent been too good this last few months so havent been online much. I spent nearly two months in hospital from July 1st last year, I felt abandoned by my gp and dietician and gradually over the months I lost two stone in weight and by the end of it I couldnt stand the taste of food as it was like cardboard! &n...

I had an ileostomy in 1976 at age 28 for ulcerative colitis with no after effects. I know how lucky I am. In my early 30's I went to Europe and got terrible stomach or what is left of my small intestine pains, with vomiting and liquid output. I lost about 10lbs in weight due to fluid loss. Nothing signifant after that until I was in my fifties and now I continue get this intermittently. It is really painful and lasts about ten days each time. Has anyone had a similar experience? Aside from being painful it is driving me crazy since I hav...

Looking for some advice.  Had ileostomy surgery 11 days ago and now that I am home have noticed a bulge to the left of my stoma which is quite painful.  I should mention I had this bulge after surgery but the sharp, burning pain began two days ago.  This area is very tender to the touch and hurts considerably.  Every where else pain has diminished significantly.  Should I be concerned about the possibility of hernia?  What symptoms should I look out for?  Any advice is g...

I have had an ileostomy since last april due to a small bowel resection, they took about 2.5 feet from me. I am wandering about a reversal, wandering if they will be able to do it. My doctor was worried about adhensions. If any one has any suggestions I would love to hear them...Thank you

Hi all, I noticed this morning that I have a discolored area at the opening of my ileostomy;  it is a small brown/gray area (not discolored from any residual output) There is no pain or any other issue.   Any thoughts?? Thanks S

Hi everyone! I joined this forum recently in search of people to talk to who have already been through a reversal of the colostomy bag. I myself have undergone the first part of the reversal, and i'm due to have the second part at the begining of june. I'm looking for advice on ways to prepare for this, mentally and physically! I also welcome any questions people may have about what i have gone through so far and advice jennie.

in it like normal bowel movements do? I still have 90% of my colon and was wondering if mucous from the digestive tract is also present in ileostomy output like it is in regular bowel movements? I know ileostomy output has digestive enzymes NOT present in normal bowel movements that make it corrosive to the skin should your bag explode or leak. So, when the output comes in contact with your skin, it thinks its "digesting" it so it gets all red and painful. I just want to know if the mucus from the digestive tract that IS pres...

Hello Everyone on this great site!! I just want to say thanks to everyone who posts - I just found this site and have had ulcerative colitis and a J- pouch resection for 30 years before I had an ileostomy placed in 2013 because of fistulas. Whatever - I should have had it done 10 years before that!! I do triathlons, coach basketball and track, work in insurance, and raised 3 kids through it all. But NOW, I just got diagnosed with breast cancer (after surviving surgery for a blockage 🙄), and the chemo is killing me, because of dehydratio...

Hello fellow ileostomates! Just wondering if there's anybody out there who has the same problem I do... I had a loop ileostomy performed on 11/2014 due to a small bowel obstruction that I still have and will be operated on 05/2015. Initially my stoma looked quite "normal" but day after day it started retracting and now it's quite tiny, half in, half out, very, very restless, and with a "personality" of its own! 😄 My doctor says that it's been retracting because I have a little adhesion that tends to pull it back and that we'll tak...

Hi everyone, My boyfriend had a partial gastrectomy on the 8th of December and was recovering very well until the 29th when we had massive internal bleeding. He had another emergency surgery and the doctors had to do an ileostomy to save his organs. It might be reversed in some munths, but so far he had very many problems with the digestion. After the very first surgery he could eat almost anything without any problem. But since the ileostomy, he has pain in the bowel area about 30 minutes after eating. He can tolerate soup quite well, b...

I was a reasonably fit and athletic 20 year old when I developed UC in 1966 and I had 2 young children. After 8 years suffering the symptoms we all know so well, we ( my wife & me ) decided upon the surgery that would leave me with THE BAG. Eventually I decided that the only way that I could accept this state was to challenge it- anything that I could do before the op, I would do after it. So I ate whatever and whenever I wanted, drank whatever, whenever I wanted, swam, dived from a high board, dived from the side of a small ship, hi...

Sorry subject line so long!  Developed small pimple next to stoma 3-4 months ago while beginning our 3 month vacation in our RV. at present, it looks the size of a small peanut and bleeds. It is painful when touched even by ostomy pouch. There is no fecal drainage from the 'peanut'. anyone familiar with this? I have a Doc appointment 4-24-18. I made the appt in Feb 2018! 

hello currently I have an ileostomy and have had it for about six months. I frequently get severe pain on and around my stoma almost like a hot knife is trying to cut its way out of it. I'm not taking any pain medicine, but I want to know if this pain is common or is it something I can prevent in any way. Any advice would be greatly appreciated.   Also I get hairs that grow on my actual stoma which I try to trim and often end up stuck in the adhesive when I change the wafer. Anyone have a solution?

tough decision to make...looking for any insights..70 year old female who has the choice of a reversal surgery.  Does anyone regret their reversal?  Very concerned about my quality.  Bag is now familiar, but the unknown is very scary for me.  Thank you.

Hello forum readers.  I had a colostomy last August due to complications from colorectal cancer.  My tumor was at the junction of the colon & rectum, so some of each was removed.  It's a long sordid story, but end result is they could not reconnect me during the original surgery last year and I've had the ostomy since.  I was done with all my cancer treatment by this past May (chemo & radiation) and scans & bloodwork so far show no recurrence, so I am getting ready to speak with my original surgeon about rev...

So, I could use some feedback here please!   I was diagnosed with colon/rectal cancer last year.  I went through all the fun stuff and had surgery to remove the cancer in January 2018.  In April when I was supposed to ahve the reversal the Dr said; "There was a small hole in your colon and a small pouch developed.  I can't do the reversal until enough scar tissue forms." He went in and cleaned up the mess that the previous surgeon had made.  I was also told it might not ever heal enough to have a reversal.&n...

hi new here is there anyone from England on this site with ileostomy 

I had surgery 2 weeks ago & have an ileostomy. Inthe  last few days I devloped a wound infection & gastritis and had terrible painful attack last night. I am taking anti biotics and omazaprole but don't wan to eat as I'm not hungrey and don't want to set off more pain. Any suggections? Also trying to drink some tea to keep out put up - is poweraid better?   I'm desperate and welcome any advice   Thanks for much in advance

Does anyone have a greyish smelly from their back passage.  I had my ileostomy 18 months ago  

Hello Everyone. I am curious about opinions, medical experiences, articles or general input on my pending reversal decisions given I have only 5cm of remaining large intestine remaining. Ileostomy October 2016 and my (ahem) bodily function below is healthy and functional.   Should I attempt reverse with only 5cm of large intestine? Thoughts? Chris

Hey, it's Maryland Gal.  I had my surgery July 13th. Surgery went well. Took 6 hours because I had so many adhesions.  My surgeon was able to bring the small bowel through the same hole. I had many other complications that kept me in the hospital for 3 1/2 weeks.  Had pluracy, a lower collapsed lung.  Then found out I had a blood clot in my leg and was put on blood thinners.  Well doctors did not know nor did I, I had ulcers.  The first one I was put in the ICU and nearly bled out...

Hi everyone, I'm due to get a loop ileostomy any day now and I'm told that in a year or two I will probably need to have a bigger operation to remove my colon as there is a risk of diversion colitis. I'm not sure if my body could cope with a big operation at this point of my life and I'm wondering what the average length of time people can remain with a loop ileostomy before needing to have the colon removed. Any comments would be very welcome.

Hi everyone!   Just had my reversal 3 weeks ago.   I woke up with a huge hole in my belly but is healing up pretty good.  I guess its the new thing not to sew you up and let it heal from the inside out.   I have a hard time looking at it but my husbands takes the flashlight and likes to look into my belly.   YUK!   I am pooing 8-14 times a day and my butt hurts. My stools are small like finger size and smaller but shaped like a triangle.  Is this normal?.  Plea...

I have an ileostomy and my stool is pretty much all liquid.  Recently did some home renovation and put in an American Standard low flow toilet.  I didn't realize the new toilets have a different compound in the ingredients that prohibits mold, mildew, stains and such from building up. It's about time!  However, due to the extreme chemicals in liquid stool, they are not compatible with the new toilets. You can't use the old fashioned cleaners in the toilet, or you'll ruin the finish. You are supposed to use jus...

hi, To anyone who has has an ileostomy take down:  I had colorectal cancer, 2 rounds of chemo and lots of radiation.  I am 8 months out of the ileostomy reversal (had a foot or more of colon removed and reconnect to rectum with pouch procedure.  Initially I had minimal control, as time went on I was able to rush to the bathroom and make it for 2 or 3 days in a row, then I would have a really bad day and night. I have been wearing adult diapers since the procedure as I and incontinent too often not to.  I have no sensat...

Hello, I am looking for information from anyone who has had a ileostomy and then had a colostomy.  How do you feel about the difference beteen the two?  If you had the ileostomy and now have a colostomy are you happy with the change?  I am interested in anything you can share about the two procedures.  I have had a ileostomy for 18 months.  I have been told I am not a candidate for a reversal and the doctor has mentioned possibly doing a colostomy.  I am wondering if going through another major surgery an...